Goldfeld discusses analyzing data from a stepped-wedge designed cluster randomized trial in a real-world context

Keith Goldfeld, DrPH, MS, MPA, member of the executive committee of the IMPACT Collaboratory Design and Statistics Core, recently discussed his work with the IMPACT Collaboratory on his blog, ouR data generation.

Goldfeld wrote about how to analyze data from a stepped-wedge designed cluster randomized trial. He said that this design can be an important tool to evaluate interventions in a real-world context, including research for the IMPACT Collaboratory in dementia and Alzheimers disease.

Read the full blog entry here: https://www.rdatagen.net/post/analyzing-the-open-cohort-stepped-wedge-trial-with-binary-outcomes/

Mitchell shares a look back at research in advanced dementia and links to her career

NIA IMPACT Collaboratory multiple principal investigator Susan Mitchell, MD, MPH, spoke at the February 4 Palliative and Advanced Illness Research (PAIR) Center Series at the Perelman School of Medicine at Pennsylvania University. Her talk, “Advanced Dementia: The Evolution of Research Informing Practice,” included a look at the overall body of work in advanced dementia and the evolution of her own research.

Mitchell described her research to date in three phases: Retrospective, Prospective, and Interventional, and described studies in each phase and how they contributed to the overall body of knowledge about advanced dementia. Mitchell concluded her talk with an introduction to the NIA IMPACT Collaboratory, describing how effectiveness and efficacy research continue the evolution of research in advanced dementia care.

To view the entire talk, please go to the PAIR Series site here: https://mediasite.med.upenn.edu/mediasite/Play/61d9013c63a24554bad8fa2506d1dfdd1d and begin the video at the 13:12 mark.

Harrison outlines the need for embedded pragmatic clinical trails and how IMPACT can help in AcademyHealth editorial

Jill Harrison, PhD, Executive Director for the IMPACT Collaboratory at Brown University, authored a blog post for AcademyHealth describing the need for embedded pragmatic clinical trails and how the IMPACT Collaboratory can help.

Harrison describes the rise in diagnoses of Alzheimer’s disease and related dementias as a global public health crisis and describes how embedded pragmatic clinical trials can help to gather real world data for clinical trials, and incorporate diverse stakeholders into study design. Read the full blog post on the AcademyHealth website.

IMPACT principal investigators share their vision of the project with LeadingAge

The NIA IMPACT Collaboratory’s multiple principal investigators, Susan L. Mitchell, PhD, MPH, and Vincent Mor, PhD, shared the vision and goals of the project with LeadingAge in an article from January 17.

“We are confident that the NIA IMPACT Collaboratory will transform the delivery, quality, and outcomes of care provided to Americans with dementia, and their caregivers, by accelerating the testing and adoption of evidence-based interventions within health care systems,” says Mitchell.

The article includes a description of the problem of Alzheimer’s disease and related dementias, as well as how the structure of the IMPACT Collaboratory will help researchers who seek to conducted embedded pragmatic clinical trials to combat these conditions.

IMPACT leaders hope their collaborative efforts will identify and validate evidence-based programs that can be adopted across PLWD communities and help people live a higher quality of life. “The goal,” concludes Mor, “is to reduce the suffering of persons living with dementia, reduce the burden on the caregivers, and ease the challenge of humanely meeting the needs of this difficult-to-serve population, while maintaining their dignity—and I am confident we can achieve this.”

Read the full article at LeadingAge here.

Registration open for statistical conference focused on cluster randomized clinical trials

IMPACT Steering Committee and Design and Statistics Core member Monica Taljaard, PhD, will be part of a panel at the 13th University of Pennsylvania Conference on Statistical Issues in Clinical Trials  on April 29th.  The conference will focus on challenges and opportunities in cluster randomized clinical trials. Registration is now open. 

Karlawish discusses diagnostic tests for Alzheimer’s disease in New York Times article

Jason Karlawish, MD

Jason Karlawish, MD,  leader of the IMPACT Collaboratory  Regulatory and Ethics Core, was  quoted in a December 20th New York Times article, “Alzheimer’s Tests Soon May Be Common. Should You Get One? Diagnostic tests for Alzheimer’s disease are already here. But the results may raise as many questions as they answer.”

Read the article here.

What can we really expect to learn from a pilot study? Goldfeld discusses answers in a blog post

Keith Goldfeld, DrPH, MS, MPA

Keith Goldfeld, DrPH, MS, MPA, member of the IMPACT Collaboratory Design and Statistics Core Executive Committee wrote a blog post about the network and how it can help with pragmatic pilot studies to investigate promising interventions for people living with Alzheimer’s disease and related dementias.

Goldfeld shares what we can expect to learn from a relatively small pilot study of a new intervention. The blog shares two articles addressing small pilot studies, and provides simulations  to see how a small pilot study could potentially lead to poor design decisions with respect to sample size. Read the full post on Goldfeld’s blog here.

Laura Gitlin quoted in New York Times article for new therapies for people living with dementia

Laura Gitlin
Laura Gitlin, PhD, FGSA, FAAN

Laura Gitlin, PhD, FGSA, FAAN, leader of the NIA IMPACT Collaboratory Dissemination and Implementation Core, was quoted in the December 8th edition of the New York Times addressing the need for meaningful activities as part of treatment for people living with dementia. Gitlin and her colleagues at the College of Nursing and Health Professions at Drexel University have developed the Tailored Activity Program, which identifies activities that are meaningful to people with dementia, and adapts the activity to the patient’s abilities to make them a regular part of their day.

“Boredom and having nothing to do contributes to having an array of behavioral symptoms, agitation, aggressiveness, apathy, rejection of care,” she said.

Read the full article at this link.

NIA IMPACT Collaboratory member speaks at NIH Collaboratory Grand Rounds

Richard Platt, MD, MS, a member of the Executive Committee for the NIA IMPACT Collaboratory Technical Data Core, was among the presenters at the NIH Health Care Systems Research Collaboratory Grand Rounds on Friday, December 6th. Details are below:

Topic

Millions More People, Stronger Collaborations: The New and Improved NIH Collaboratory Distributed Research Network

Date

Friday, December 6, 2019, 1:00-2:00 p.m. ET

Speakers

Richard Platt, MD, MS
Professor and Chair
Harvard Medical School
Department of Population Medicine

Kevin Haynes, PharmD, MSCE
Principal Scientist
HealthCore

Denise Boudreau, PhD
Senior Scientific Investigator
Kaiser Permanente Washington Health Research Institute

Jerry H. Gurwitz, MD
Professor of Medicine, Family Medicine and Community Health, and Population & Quantitative Health Sciences
University of Massachusetts Medical School
Executive Director, Meyers Primary Care Institute

Christopher B. Granger, MD
Professor of Medicine
Duke University

 

NIA IMPACT Collaboratory Stakeholder Engagement Team holds in-person meeting

The NIA IMPACT Collaboratory’s Stakeholder Engagement Team (SET) conducted an all-day meeting on December 3, 2019  at Hebrew SeniorLife in Boston, MA. Attendees included the SET, the Stakeholder Advisory Committee (SAC), and additional participants relevant to the IMPACT Collaboratory’s efforts regarding stakeholder engagement. Click here to see the full list of participants. .

The objectives were to:
1) Review the role of the SAC;
2) Provide advice to the IMPACT Collaboratory on how to integrate stakeholder engagement into its mission;
3) Strategize about the optimal way to assist the selection and guidance of pilot project; and
4) Discuss priority topics to address in guidance materials.

After a welcome from Gary Epstein-Lubow, MD, and Katie Maslow, MSW, Susan Mitchell, MD, MPH, presented an overview of the IMPACT Collaboratory. This was followed by personal messages about the importance of research to address aspects of the lived experience of dementia presented by a person living with dementia, Louise Phillips, MD, and a family caregiver and dementia care clinician, Katie Brandt, MIM.

Historic definitions of SE as prepared by the Patient-Centered Outcomes Research Institute were provided by Lori Frank, PhD, MA. Ellen Tambor, MA, presented SE work from the original NIH Collaboratory; this was followed by information from Katie Maslow about SE specific to dementia care research in the U.S.   The NIA IMPACT Collaboratory’s process for supporting pilot ePCTs was reviewed by Laurie Herndon, MSN, followed by suggestions from Jill Harrison, PhD, as to how stakeholders can be integrated into the pilot study processes.

In the afternoon, pilot study expectations were further explored as they relate to the involvement and engagement of people with lived experiences of dementia as well as a wide array of clinicians, service providers, health care system leaders, and payers.

Antonia Bennett, PhD, of the Collaboratory’s Patient and Caregiver Reported Outcomes (PCRO) Core and Monica Moreno, BS,  of the Alzheimer’s Association described the development of a “Lived Experience Panel”. This was followed by a discussion of engaging health systems leaders which was led by Alice Bonner, PhD, RN,  and included Lee Jennings, MD, MSHS, David Gifford, MD, MPH, and others.  The final session was an overview of selected advice from the SAC emanating from the day.

Outcomes of the meeting included:

1) Successful orientation of SAC members;
2) Preliminary plans for clarifying definitions and processes regarding SE within the Collaboratory;
3) Review of SE activities related to pilot study investigators; and
4) Discussion of SE activities including development of a Lived Experiences Panel, guidance documents for investigators, a logic model for SE activities within the Collaboratory, and methods for evaluation of SE activities.